ED coming around after time

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Regular Member

Date Joined Nov 2009
Total Posts : 21
   Posted 3/8/2011 11:11 PM (GMT -6)   
I find the ED after this surgery something I can hardly understand. For the first 6-11 month no response to drugs or much of anything except the shot. At 12 month all of a sudden things started waking up a little bit. At 18 months still more. Who knows what it will be at 2 years. I've heard of others talk about it but it is hard to fathom. I started loosing hope of anything and then our of the blue it changed on me. Is this common? Anyone else have this experience?
Initial PSA 4.7 retest 4.9
Biopsy January 2009, two cores 3+3=6 Gleason
Diagnosed Febuary 2009, age 47
open Surgery June 2009, radical, open, nerve sparing retropublic prostectomy
No positive margins and a favorable Gleason's grade of 3+3=6
PSA August 2009 .3
PSA November 2009 undetectable
PSA's since=undetectable

New Member

Date Joined Oct 2009
Total Posts : 13
   Posted 3/8/2011 11:43 PM (GMT -6)   
I had a radical prostatectomy on November 9, 2009.  I had ED ever since, even with viagra, levitra, and cialis.   Then, all of a sudden, without any pills I got a mild erection 2 weeks ago while cuddling in bed with my wife.  One thing led to another and the next thing I knew we were having sex. It wasn't perfect, but it was great.  Then a few nights ago while dreaming I found I had another erection.  This time even better.  So, I think there is something to be said for never giving up mentally.  I also think there is something to be said about never putting pressure on yourself.  I have a great wife and she never put pressure on me either.   I had never given up on recovery, but such a long slow recovery did make me have doubts.  This weekend I am going to try to give things a bit of o boost with levitra.
I hope this helps those of you that are wondering if things can get back to a functional level.  I have sseen guys posting here discouraged after 3,6, 9 months.  It took me 16 months to get my first positive results.
Stay positive.
 PSA 3.7 it had doubled in 3 months
Gleason 4+3 = 7
Da Vinci prostatectomy November 9, 2009
PSA non detectable since surgery
Age 55 at surgery, now 57

Regular Member

Date Joined Sep 2009
Total Posts : 462
   Posted 3/9/2011 7:31 AM (GMT -6)   

I am 59 years old and I am 4 years post op from robotic surgery and I was very lucky in that I had no ED problems after surgery from the day the catheter was removed. I had no problem getting rock solid erections, BUT!!!! ..... only with constant manual stimulation. With continual manual stimulation, I could get and maintain an erection for as long as the stimulation continued. Without the manual stimulation, the erection went flat in seconds.

Prior to surgery, just looking at a naked woman was enough to get a solid erection, but after surgery, I could think about sex and look at naked women 24/7 and feel absolutely nothing down there, not even a tingle, but as soon as the manual stimulation started,  then I so did the erection.

Then about two years post op, I noticed that when I looked at a naked woman, I started to actually feel a partial erection start from just the thoughts alone, without any manual stimuli. Now at four years post op, I wake up almost every morning with a solid erection, and now I can also get about 50% erection from just thinking about sex and looking at a naked woman without any  manual stimuli. I guess from this you can conclud that nerves do heal and reconnect over time.

Regular Member

Date Joined Dec 2010
Total Posts : 172
   Posted 3/9/2011 8:23 AM (GMT -6)   
THANK YOU GUYS!!!! I really needed to see this thread! I am only 5.5 months post op RRP no ED issues prior 45 years old now. I was just starting to think I was going backwards and maybe peeked out on what I was going to get back down there. Then this last 3 days I have noticed a little more firmness with manual stimulation and yesterday even achieving nearly 100% but like NY sooner said had to continue with stimulation to maintain it. but this is a step farward for me and I am soo glad to see other guys see this type of progress even further out than where I am from the surgery. I remain hopeful of regaining everything I had prior to surgery. I will still be starting injections in a few weeks though unless a major break threw between now and then...
age 44 when diagnosed 45 now
RRP 9-28-10
gleason 3+3
pathology report clear
11-1-10 PSA 0.02
3 month 0.00
pump works ok
12-1-10 noctural erections, not very strong maybe 20%
tried all oral meds and nothing yet
Dr. R. Saint in Tulsa did my procedure, I do NOT recomend him!!
2-28-11 ED seems to be getting worse, no nocturnals for a week, and nothing spontanious at all still

Regular Member

Date Joined Nov 2010
Total Posts : 143
   Posted 3/9/2011 10:36 AM (GMT -6)   
I need manual stimulation to get an erection except for nocturnal erections. But At least I can get one The Dr. told me 1 to 2 years. I got one in three weeks. I can have sex now if I could only have something that resembled an orgasm.

Regular Member

Date Joined Oct 2009
Total Posts : 103
   Posted 3/9/2011 5:05 PM (GMT -6)   
Took me a year and I had only one side spared. At 1 1/2 I just got my .005 reading on psa and with viagra I'm 100% so its all good.
Age 40
Pre-op PSA was 5.8 from wellness test on May 19, 09
Follow up test from uro was 4.6 with a 9.3% free psa
Gleason 3+3 in one core, 3+4 in second core of 12 samples taken
Surgery performed 9-19-09.
One side nerves spared. Nerve graft on other side.
One year mark Viagra works 100%. Pump works 100% new PSA on 9-10-10. Last PSA .005

Regular Member

Date Joined Nov 2009
Total Posts : 21
   Posted 3/10/2011 9:45 PM (GMT -6)   
It is great to hear all your stories. I agree, it is difficult to keep the faith that it can come back when you don't feel anything at all. I still have a problem believing it and wonder if it will all just go away. I think the whole prostate cancer is just a huge blow to our confidence--it is so central that getting any confidence back is difficult. I'm a psychologist so I tend to look for cause and effect stuff. Sorry about that. Cheers to all of you. Keep on sticking with it.

Veteran Member

Date Joined Aug 2010
Total Posts : 644
   Posted 3/10/2011 10:19 PM (GMT -6)   
I had little firmness for the first six months; without viagra nothing, with viagra was able to have a perfunctory little bit of inter course after a lot of cramming. But in the second six months it's come back to about 80% of its former state without drugs. It does take manual stimulation more than before and my ability to control orgasm is less, but it's good enough. (bi-lateral nerve sparing DaVinci surgery, age 55)

So keep the faith, if you're seeing progress there's a good chance it will continue. Get lots of practice, alone or with a partner as the circumstances dictate. Neurons need exercise.
DX age 54 12/2009
PSA 5.6, DRE-, high pre-op PSAV. Clinical stage T1c
Biopsy: Gleason 3+4 with PNI / 6 of 14 cores + / 10% of total length + / worst 45% +
DaVinci RP 2/2010
pT2cNx / Gleason 3+4 / PNI+ / SM- / SV- / EPE- / Tumor vol 3cc / vol 40cc / 63 gm
PSA - 4/10 <0.01, 8/10 0.01, 12/10 0.01

NV RTRD 2007
Regular Member

Date Joined Jan 2009
Total Posts : 75
   Posted 3/10/2011 10:48 PM (GMT -6)   
O n my case, after my first post op check up, my uro gave me the smallest dosage of levitra to start stimulating blood flow. Then it was increased gradually by the VA to 20 mg taking it once a week. It did not have any response at all. Until one day in Jan last year all of a sudden I had a good one. The it stop again, until about mid year then almost once a week. Last Monday, after my recent post op check up (PSA <.06) my uro gave me two week sample of cialis for everyday use and to viagra which he told me to try it and see which one works the best. Well, I just hope of of these will work. But this is the least of our concern. Having the cancer removed was our goal and right now my PSA are undetectable which we hope and pray that it will continue to be that trend. ED will hopefully will be taken cared of eventually.
Age 54; Age DX 53
PSA: May 07- 2.9; Dec 07-4.3; Jan 08- 6.1; May 08- 6.4; Sep 08- 7.3 ; Sep 08- 9.6
Bone Scan: Mar 2007- Normal. Biopsy Mar 08: Gleason 3+3=6 Stage II.
Ultrasound @ UCSF Jun 08: 7x14x10 mm lesion in left gland. DRE positive,
RRP: 4 Dec 08; Discharged - 8 Dec 08; Cath removed- 18 Dec 08.
Post PSA: Jan 09 <0.05; Mar 09 <0.05 ; Sep 09 <0.05; Feb 10 <0.05; Sep 10 <05; Mar 11<.06

Bob D
Regular Member

Date Joined Mar 2008
Total Posts : 199
   Posted 3/11/2011 12:14 AM (GMT -6)   
Congrats. It just gets better with time.
I got my first starting erection 5 days post op. Yes I did need constant manipulation at first.
However now you can hang a couple shirts on coathangers on it. LOL
Best wishes for you.
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